Dr. Brenda Weigel visits with patient Laura Goering, 19, at University of Minnesota Amplatz Children's Hospital, December 12, 2013. Goering is being treated for osteosarcoma, the same cancer that Zach Sobiech had. Weigel, a Pediatric Hematologist Oncologist, is leading the research team at the university to find causes and new therapies for the rare cancer. Goering is a student at the University of St. Thomas and a St. Paul resident. (Pioneer Press: Chris Polydoroff)

Dr. Fritz looks the dog in the mouth during his physical exam, he's in great physical shape. Max, the mostly Lab owned by Kelly Holland from Minneapolis, received a check up in its batlle with osteosarcoma at the Univ. of Minnesota's Veterinary Medical Center Monday morning December 16, 2013. Osteo is the same sort of cancer that ravaged Zach Sobiech--his family has decided to contribute to help fund osteosarcoma research. (Pioneer Press: John Doman)

Max gets a treat as he sits on the scale--the first step in his oncological check up at the "U". Weight's good. The mostly Lab owned by Kelly Holland from Minneapolis, received a check up in its batlle with osteosarcoma at the Univ. of Minnesota's Veterinary Medical Center Monday morning December 16, 2013. Osteo is the same sort of cancer that ravaged Zach Sobiech--his family has decided to contribute to help fund osteosarcoma research. (Pioneer Press: John Doman)

17-year-old Zach Sobiech, left, plays guitar as his friend Samantha "Sammy" Brown sings a song they wrote earlier that night called 'Star Hopping' in Lakeland, Minn., on December 3, 2012. They were recording the song at the studio called School of Music & Mayhem run by Joe Schertz, not pictured.
(Pioneer Press: Ben Garvin)

Max, a black Labrador from Minneapolis, seemed more interested in eating Milk-Bone biscuits than in making medical history.

But the veterinarians who gave Max a clean bill of health after his checkup at the University of Minnesota’s Veterinary Medical Center in St. Paul last week say the dog is a vital element in groundbreaking research to find a cure for osteosarcoma.

Max, diagnosed with the aggressive bone cancer in January, had his front left leg amputated and underwent five rounds of chemotherapy. He is part of a clinical trial to determine whether genetically engineered salmonella could be used to treat the disease.

With Max in remission, the doctor leading the study, Jaime Modiano, is hopeful.

Modiano, director of the university’s Animal Cancer Care and Research program, is one of four faculty investigators working to find a cure for osteosarcoma using money from the Zach Sobiech Osteosarcoma Fund.

Sobiech is the Lakeland teenager whose song “Clouds” became an Internet sensation shortly before he died of cancer in May at age 18. His fund has raised more than $667,000 to date.

“This is bittersweet,” said Modiano, a veterinarian who has a doctorate in immunology and did his clinical training in pathology. “If I had my preference, Zach would be celebrating Christmas right now, and we wouldn’t have the money. Every time something good happens because of something bad that happens, it reminds us of how far we have to go.”

Modiano is working with Logan Spector, an associate professor in the Department of Pediatrics and a pediatric cancer epidemiologist; Subbaya Subramanian, an assistant professor in the Department of Surgery who specializes in MicroRNA mediated gene regulation in human sarcomas; and David Largaespada, a mouse geneticist and professor in the Department of Genetics and Cell Biology.

“We’re trying to piece out the genetic components of risk and the genetic components that make tumors behave more or less badly,” Modiano said. “We need to do that in order to understand how to prevent and treat the disease.”

About 400 children and adolescents are diagnosed with osteosarcoma in the United States each year.

BOYS AT GREATER RISK

Osteosarcoma tumors develop in rapidly growing bones during a growth spurt, said Brenda Weigel, who was Sobiech’s primary oncologist at the University of Minnesota and a chief medical adviser for the Children’s Cancer Research Fund. Boys are at a 20 percent greater risk of getting the disease.

Tumors are generally found in the arms or legs, particularly around the knee and shoulder, but they can also arise in the spinal column or the pelvis, or any bone in the body, she said.

Survival rates depend on the location of the tumor and whether the cancer spreads. The overall cure rate is about 65 percent, but when the cancer spreads, there is only a 20 percent chance of survival, Weigel said.

The money raised from “Clouds” will help change those numbers, she said.

“We never, ever could have conceived of the amount of money that has come in and is continuing to come in,” she said. “It’s phenomenal. Zach desperately wanted to make a difference. He wanted whatever money that was raised … to go to research for a cure.”

The research team plans to use its findings over the next two years to apply for a major National Institutes of Health program grant to continue its work.

Rob and Laura Sobiech, Zach’s parents, specifically asked that the money be used for research that could be used to secure larger federal grants.

“It needs to be ‘upstreamed’ … because that’s where the real work happens, that’s where the action happens — when you can take seed money and leverage it and make it into something bigger,” Laura Sobiech said.

The Sobiechs have different goals when it comes to research. Laura Sobiech wants researchers to learn what causes the disease; Rob Sobiech wants them to come up with treatment options.

“I feel like if we could understand the cause of the disease, we could figure out how to fix it,” she said. “Rob’s passion is treatment for kids who have been diagnosed. The current treatments just are not effective. He wants to help kids now, as do I, but I also want to understand the origin.”

That their son just happened to be a patient at the U, one of the nation’s top osteosarcoma research centers, was not a coincidence, Laura Sobiech said.

“That was God at work. Absolutely,” she said. “I always thought there was a reason we were supposed to be at the University of Minnesota. We always felt incredibly blessed that that facility was so close to us.”

After meeting with the research team over the summer, the Sobiechs became even more convinced.

“This is their passion, their life’s work,” Laura Sobiech said. “They are dedicated to it. We changed after that meeting because we understood this money … this money is going to do something. God has figured out a way to make this worth something bigger.”

WORLDWIDE INTEREST

Zach Sobiech was diagnosed with osteosarcoma in the fall of 2009. Three years later, he wrote and performed “Clouds” as a farewell to family and friends.

It has received more than 9.2 million hits on YouTube, reached No. 1 on the iTunes singles chart and ranked No. 59 on Billboard’s list of top songs of 2013.

Proceeds from the sales of Sobiech’s music go to his fund through the Children’s Cancer Research Foundation. Sales continue to go through the roof, especially overseas, said Scott Herold, who is CEO and founder of Rock the Cause, Sobiech’s record label.

“There was a huge uptick of sales in Europe, especially France,” he said. “Until two weeks ago, 90 percent of sales came from North America; now only 40 percent of the sales are coming from North America.”

He credits Justin Baldoni’s documentary, “My Last Days: Meet Zach Sobiech,” which was recently translated into 21 languages, for the resurgence. The documentary has had nearly 12 million hits on YouTube.

Amy Adamle, Zach’s girlfriend, said she knew something was up when she started getting a large number of Facebook friend requests from people she didn’t know and then got 300 French Twitter followers within two days.

“They said they were from France and that they didn’t speak a lot of English, but that Zach had really touched their lives,” she said.

John Hallberg, CEO of the Children’s Cancer Research Fund, said that Sobiech “taught the world how to face a cancer diagnosis with grace, with a positive perspective and to turn that diagnosis into something really positive.”

“He taught us how to live, and he taught us, in some respects, how to die,” Hallberg said. “He will leave a permanent legacy for other cancer patients. The (money) will make a difference, I can say that without question.”

DOGS ARE KEY

Researchers are working on determining what causes osteosarcoma and why some kids get it and others don’t.

“Where does osteosarcoma show up on our child’s genes?” Hallberg said. “If we know where the error is happening, how can we target that more effectively? How can they develop better outcomes so we don’t have more Zach Sobiechs who pass away from this illness?”

Dogs might turn out to be kids’ best friend.

The research team is comparing the DNA of humans who have osteosarcoma to that of dogs who also suffer from the disease. A dog’s shorter lifespan offers a compressed timeframe to view the results of the research and therapies, said Spector, the epidemiologist who is mapping the osteosarcoma risk genes.

Osteosarcoma is the most common type of primary bone cancer in dogs, accounting for up to 85 percent of tumors that originate in the skeletal system; about 8,000 new cases are diagnosed in dogs each year in the U.S.

Osteosarcomas are seen most often in the long bones of the dogs’ limbs, most often near the knee and away from the elbow.

“Dogs get osteosarcoma much more frequently than humans,” Spector said. “Can we look at the same genes in humans that are associated with osteosarcoma in dogs? If we find the same genes are driving things, then dogs are a good test case, and there are a lot more dogs that get osteosarcoma, so we could test agents on dogs and get to answers much faster than we would with humans.”

Spector said the researchers have a lot of ambitious goals.

“We want to, first of all, be able to understand the genetic-risk factors — why kids get osteosarcoma in the first place,” he said. “If we know that, then we can potentially catch them earlier.

“I personally would rather prevent it entirely because the therapies are toxic,” Spector said. “I am dedicated to solving this, even if it takes 30 years.”

Spector said he and the other team members had been working on different pieces of the puzzle and knew of each other’s work but hadn’t been brought together formally until the Sobiech research grant.

“It’s a remarkable coincidence,” he said. “Zach could have been a patient anywhere. That he was a patient here, where we have this collection of talent and people who think about osteosarcoma and who can take the legacy that he has created and turn it into lasting information about treatment and risk prevention, is a wonderful thing.”

Dogs like Max are going to help. As part of the clinical trial, Max underwent a bone biopsy of his proximal humerus and had his leg amputated Jan. 18. He also underwent five rounds of chemotherapy that ended in May.

“There was no reason not to do it,” Max’s owner, Kelly Holland, said. “It benefits other dogs, and it’s for research. I mean, that’s the point, right? The U is a research hospital, and that’s what they do.”

Max is already beating the odds.

“The chances of still being without disease and still alive at 10 months are 50-50,” Modiano said. “Our hope is that Max’s cancer will not recur and that he will live out his whole life happily.”

A 100 percent survival rate is the ultimate goal, no matter how long it takes, Laura Sobiech said.

“Zach really, truly had a heart for the other kids, especially the young ones,” she said. “His heart really broke for the little ones because he felt like their childhoods had been ripped away, and he didn’t want anybody else to have to go through that.

“He said to me in the hospital one day, as he was rooming with a little boy who had it, that he would give his life so that boy could have his childhood back, and he meant it, he really did,” she said. “As a mom, hearing that from your 14-year-old and thinking ‘Your childhood has been ripped away’ — I was intensely proud of him at that moment, because he got it on a level that a lot of adults don’t.”

Mary Divine is a reporter for the St. Paul Pioneer Press. She covers Washington County and the St. Croix River Valley, but has also spent time covering the state Capitol. She has won numerous journalism awards, including the Premack Award and the Minnesota Society of Professional Journalists' Page One Award. Prior to joining the Pioneer Press in 1998, she worked for the Rochester, Minn., Post-Bulletin and at the St. Joseph, Mo., News-Press. Her work has also appeared in a number of magazines, including Mpls/St.Paul Magazine, Twin Cities Business Monthly and Minnesota Magazine. She is a graduate of Carleton College and lives in St. Paul with her husband, Greg Myers, and their three children, Henry, 16, Frances, 14, and Fred, 11.

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